I advocate for all challenged with chronic pain as well as their family, caregivers, healthcare professionals & public. My speaking engagements, media interviews, and books on chronic pain inspire patient engagement filled with HOPE & motivation. I have been battling chronic pain since 1997. First with endometriosis. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), RA, hypothyroid, migralepsy, TMJ and more. My content creation offers practical advice, tips and tricks for better daily living and resolutions to the challenges of living with chronic pain. I have had a medical journey with twist and turns and now educate others on navigating the minefield of the healthcare system. I serve on multiple pain advisory boards and coalitions. WEGO Awards 2012 Ms Congeniality, 2016 Lifetime Achievement, 2016 Best Team Performance. For more information on me check out www.barbyingle.com
I've been writing and consulting about diabetes for over eight years. After being diagnosed, in 2008 I started a comprehensive research project to understand how diabetes would affect me, my family and how I could also help others understand my findings. This led to starting four blogs all devoted to diabetes for kids, adults, seniors and even pets. At one time, we had over three million followers, a 6 day a week talk show on Blog Talk Radio for over two years and we received numerous awards and proclamations from the City of Clovis, California for our work online and in the community as it relates to diabetes. We also hosted a Livestream event for 4 years where we had over 250,000 attendees.
I'm an Patient Advocate and a Patient Expert. I work with patients. I volunteer to help patients. I represent patients through advocacy work both locally and on Capital Hill. I'm the Founder and CEO of a patient organization. Most importantly I am a patient.
I represent patientsgive the patient perspective and ensure that the patient voice is taken into consideration during the entire product development process. I participate in patient required Consumer Reviews, Patient roundtables, advisory boards. I'm
I have suffered with autoimmune illness, specifically rheumatoid arthritis, for over thirty years now. Since the age of nine, I have fought the illness and have both won and lost many battles. Joint replacements, deathly infections, and even a heart attack - I've seen and done it all. In this time, I have also written an autobiography, created a very successful blog, and I star in a short monthly podcast. I have become a valuable member of the online autoimmune and "spoon" community, and I am acquainted with not only patients but many doctors, professionals, and organizations as well. If you are looking for rheumatoid arthritis and/or autoimmune illness expertise, look no further.
I am a freelance journalist specializing in researching and writing about health related issues. My interest in this field began when I was diagnosed with a little known chronic blood disorder (ITP) and had to do the research to find out exactly what I had. I am also a full-time caregiver for my disabled husband and have interviewed health professionals and other caregivers to succeed at this task.
I have used my skill at searching out answers to write articles for newspapers, blogs, websites, etc on various health related topics.
Delivers process efficiency by leading collaborative problem-solving with multi-disciplinary teams.
Able to integrate technical solutions with entrepreneurial insight to yield exceptional bottom-line results.
Creative and innovative synthesizer of insights and challenges to identify new unique solutions.
Navigated complex care management through two medically complex children who have had over 14 surgeries and 100 days as in-patients.
I was diagnosed stage 4 lung cancer in June of 2009. I have received chemotherapy, targeted therapies and am currently stable on immunotherapy. The past eight years I have sat on numerous medical panels, public forums and have done multiple media events for Genentech for lung cancer awareness.. Recently I spoke at Genentech’s All Bio Conference in Chicago.
I have been a Consumer Reviewer for the Department of Defense Lung Cancer Research Program since 2013. I am on the Patient Advisory Boards of Lungevity, Surviveit and The Society of Immunotherapy of Cancer, I am also on the Patient Action Committee of John Hopkins University.for Project Transform.
My story has been shared multiple times over the years by multiple media organizations including Patient Resources, ASCO Post, ABC News, Stanford Medicine Scope. Links to stories that have been shared about Penny and I are easy to locate on the internet.
I became ill in 2001 and over 4 years saw 51 specialists that could not diagnose my illness. I was handed a Medline study from Christopher Reeves' Neurologist and was told to find the surgeon that performed that study. It lead me to Pittsburgh & Dr Peter Jannetta, Godfather of Modern Neurosurgery. He saved me from becoming a quadriplegic & worse. I never imagined I would develop multiple Rare Diseases at 31 yrs old, I had to learn to live a new limited life and the only way to start was with knowledge, then with helping others when I was well enough, and I have never stopped. I am a Leader in the Rare Disease Community, a Healthcare Activist, and Lobbyist. I have been fortunate to work with 1000's of Rare Disease Patients, Health and Disease Organizations and Foundations, Healthcare Stakeholders and learned from them all. Now I try and improve Healthcare one day and project at a time.
I am a nurse and respiratory therapist. My daughter has a progressive heart disease and while being her healthcare support I have found myself being an advocate for many others. I am now doing this as a career. My mission is to be able to accompany the client through their illness or wellness to a meaningful experience.
Office visit companion
Care plan review and advising
Locating specialist for needed care
Audit medical billing and/or intervention as requested
Coordinate home care to aid in keeping client grounded in their environment
Evaluating facility needs if home care is not feasible
Acquiring durable medical equipment when applicable
-women's health advocate
-empower women to navigate perimenopause & menopause with confidence and ease
-unbiased; while I share my own journey & experiences, I am not endorsed by a particular brand or modality
-product development: 30 years in marketing & communication
My passion is to write, research and share information to empower others in the multiple sclerosis community. I write for MultipleSclerosis.net, MultipleSclerosis News Today, and my personal blog InsideMyStory.com. My interests in MS research led to my role as a merit reviewer with the Patient Centered Outcome Reach Institute, and the DoD. I am associated with the Accelerated Cure Project for MS and the PCORI funded Patient Powered Research Network (PPRN) and I serve as the Lead Patient Representative and Chair of the iConquerMS™ Governing Board.
I take pride in disseminating credible information to my communities whether it be in small in-person or one-on-one conversations, online within patient forums, through Facebook groups, or at national conference presentations. Knowledge is meant to be shared and I am fortunate to be afforded the opportunity to do so. I remain open to new ideas and opportunities for advocacy work and patient representation in all areas of the MS community
I'm a Chief Message Officer: a message maven who creates content strategy that tells the stories about the value you deliver in the marketplace. *My* biggest value: helping you find the funny in your B2B story, and using that humor to drive your message home.
I have a special interest in healthcare/healthcare tech, and have a big voice in the e-patient community. The World Health Organization tagged me as a patient engagement expert in 2014. If you're looking to drive better clinician/patient communication, I can help.
I have been working with patient communities and health activists for 20+ years, helping dozens of companies (including biotech, pharma, recruitment firms and CROs) recruit patients for clinical trials through influencer-driven innovative digital programs. If you're interested in adding a patient influencer strategy to your recruitment efforts, please contact me.
I went from pediatric cardiac patient to pediatric cardiac nurse, and somewhere along the way I was diagnosed with a slew of other diseases- systemic lupus (with many overlapping autoimmune diseases), cervical cancer, and had a double mastectomy after a pre-cancerous lump was found in my breast. Fun times.
When my nursing career had to be put on hold due to my deteriorating health, I began a new career as a patient advocate/influencer. I started my blog, Luck Fupus, in 2012, and have since used that as a platform to travel the country and share my (crazy) story, discuss hot button topics like patient centricity and transparency, and be the voice for patients. I've received scholarships to attend and speak at a variety of healthcare conferences including Stanford MedicineX, PCORI Annual Summit, MMM Transforming Healthcare, Patients as Partners and many more.
Kendra holds a BS in Public Health from the University of Maryland. She has extensive knowledge on the complexities of living with chronic medical conditions & lifestyle management strategies from working in pharmaceutical & medical sales, through the development and implementation of various health education programs, through medical writing & publishing. Kendra has been active in the EDS community for over ten years. It was through Kendra’s life, and professional experiences, that she founded EDS Wellness, including Wellapalooza Integrative Wellness Conferences (& retreats!), Moving Naturally w/ Hypermobility Seminars, “Just 5 Minutes,” "Invisible Strength," & the EDS Ride for a Cause.
Kendra is the Executive Director & Founder, EDS Wellness, Inc. She also started 2 other small businesses -- one in medical sales and one in book publishing. She is a Certified Health Education Specialist (C.H.E.S.), a 200hr Certified Yoga Instructor and Restorative Exercise Specialist.
Lead the Continuous Improvement program at a multi-national med tech firm. Teach powerful operational excellence methodologies, including designing systems focused on customer value, and training trainers for effective & broad standardization of best practices. Expert in coaching leaders & team members to develop skill in scientific problem-solving. Technical background in Quality Engineering & Mathematics.
Since 2012, collaborated with hundreds of healthcare professionals to drive favorable outcomes for my medically complex son. Experience includes thousands of hours spent in inpatient settings on both coasts of the US, and countless hours working to manage care at home. Through repeated success in the face of terrible odds, developed a deep passion for co-produced care leveraging the unique assets that patients/carers and professionals each bring to the table.
Eager to help any organization seeking to move in this direction.
As someone who survived a sudden cardiac arrest and was flatlined for approx. 34 minutes, I have interest in assisting health systems in creating environments that engage patients (and care-givers), and health care providers to create a culture of curiosity to solve some of the most thorny problems facing healthcare. A particular expertise can help in asking questions in cardiac rehabilitation and how we might raise awareness and increase participation.
I've also developed a number of presentations and have received positive feedback from speaking at local and national conferences including at the University of Michigan and Medx conference at Stanford.
Finally, with a Phd in higher education and a 30 year career as a practioner and teacher, I am now working to find ways to co-create curricula in med school and other graduate health programs that is created by patients, taught by patients and hopefully reinforces the reasons why students are studying health.
Entrepreneur and Senior Executive focused on delivering innovative solutions to the healthcare market. Founder of CircleLink Health, and HCCP which leveraged services and technology to improve care delivery for providers. Led multi-million dollar global initiatives with domain expertise in healthcare, care management, practice management, healthcare information technology and reimbursement services with experience transferring cross-industry best practices. MBA in banking, finance and investments with early career in financial analysis provides business focus to IT healthcare career. Twenty years’ executive leadership and management consulting experience, including working with large and small providers, payers, pharmaceuticals, ACOs and healthcare technology companies.
8 years of Registered Nursing experience in the following inpatient areas: Acute Care Medical/Surgical/Pediatric, Emergency Room in Level 3 and 4 Trauma Centers, Intensive Care, Labor/Delivery, Nursery, Post Anesthesia Recovery, Float Nurse, and House Supervisor. Also have experience in Home Health and Hospice Nursing.
Served as the nurse team leader for an electronic medical record implementation for a critical access hospital converting from all paper documentation. Responsible for building electronic version of the paper forms. Also responsible for training all end-users (Physicians, Nurses, and ancillary staff).
I have been home sick for 3 years with autonomic neuropathy, a rare disease, but still have nursing running thick in my blood. I am able to offer expertise in all of the above areas, as well as offering expertise in patient advocacy as well as numerous health conditions.
Bilingual nonprofit management and fundraising professional with 20 years’ experience in Nonprofit Management, Annual Giving, Major Gifts, Board Development and Event Planning; Proven success in raising millions annually for a metropolitan medical center; Experience in Healthcare and Higher Education; Extensive experience working with volunteer leaders, Board of Directors, and employee volunteers through Corporate Social Responsibility and Sustainability programs. Currently serving as a patient advocate living with type 1 diabetes. Represent community of women living with diabetes through DiabetesSisters, a national nonprofit organization whose mission is to educate and support women living with diabetes, and to advocate on their behalf.